6
Cancer Survivorship

The preceding chapter provided an overview of the National Institutes of Health's (NIH's) efforts to apply new knowledge to address the needs of individuals living with or at risk for cancer, whether through research applications in clinical trial settings or through efforts to disseminate information to affected communities and their providers. These efforts would be fruitless, however, without sensitivity to the needs of individuals living with cancer and their families and the unique needs of ethnic minority and medically underserved communities. In this chapter, the committee addresses this aspect of the committee charge: to report on "the adequacy of [NIH's] understanding of survivorship issues that uniquely impact on minority and medically underserved communities."

The term survivorship is complex. The literature on cancer survivorship ranges from issues of drug efficacy, clinical trials, and 5-year survival rates to pain management, psychosocial needs, quality of life, religion, and spirituality. Furthermore, the last set of issues often involves the cancer patient's family, friends, and significant others. Consequently, for the purposes of this report, the committee did not attempt to define the term either narrowly or precisely. However, it should be noted that survivorship issues may be considered to exist on a continuum, with quantity of life at one end and quality of life at the other

This chapter is divided into three sections. The first section reviews pertinent research literature on cancer survivorship. The second section describes NIH programs and research relevant to cancer survivorship and



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 230
6 Cancer Survivorship The preceding chapter provided an overview of the National Institutes of Health's (NIH's) efforts to apply new knowledge to address the needs of individuals living with or at risk for cancer, whether through research applications in clinical trial settings or through efforts to disseminate information to affected communities and their providers. These efforts would be fruitless, however, without sensitivity to the needs of individuals living with cancer and their families and the unique needs of ethnic minority and medically underserved communities. In this chapter, the committee addresses this aspect of the committee charge: to report on "the adequacy of [NIH's] understanding of survivorship issues that uniquely impact on minority and medically underserved communities." The term survivorship is complex. The literature on cancer survivorship ranges from issues of drug efficacy, clinical trials, and 5-year survival rates to pain management, psychosocial needs, quality of life, religion, and spirituality. Furthermore, the last set of issues often involves the cancer patient's family, friends, and significant others. Consequently, for the purposes of this report, the committee did not attempt to define the term either narrowly or precisely. However, it should be noted that survivorship issues may be considered to exist on a continuum, with quantity of life at one end and quality of life at the other This chapter is divided into three sections. The first section reviews pertinent research literature on cancer survivorship. The second section describes NIH programs and research relevant to cancer survivorship and

OCR for page 230
information that the committee received from representatives of cancer survivorship groups and community organizations. The final section provides the committee's recommendations. Review of Related Literature Improved prevention and detection methods coupled with advances in medical treatment have resulted in increasing numbers of cancer survivors. Today, there are more than 8 million cancer survivors, and for 5 million of these survivors their cancers were diagnosed 5 or more years ago (Beyer, 1995). The term cancer survivor means different things to different people, from a minimum—a person who has been free of cancer for 5 or more years—to a maximum—anyone with a history of cancer—beginning at the point of diagnosis and continuing through the rest of life. The latter definition carries with it a range of experiences and interventions that include a variety of programs in patient education, peer support services, exercise modalities, counseling employment services, and long-term follow-up clinics (Johnson, 1995). For example, there is a growing body of discussion regarding the development of free-standing survivor clinics for children and adults (Hollen and Hobbie, 1995). In addition, late effects of multimodality treatments may result in organ compromise or new primary cancers for a growing population of long-term survivors of cancer (Konsler and Jones, 1993). Cancer survivors often face a range of health-related, financial, social, and psychological needs and concerns that may affect treatment and that may even persist well after diagnosis. One study surveyed the current physical, psychological, and social functional status of a sample of breast cancer survivors 16 months to 32 years from their original surgery for breast cancer. The results revealed that length of survivorship is not necessarily associated with a diminishment of concerns about the cancer. Chronic physical problems, continued thoughts about recurrence, nervousness associated with medical follow-up, concerns regarding health insurance coverage, and other social concerns remain significant issues for many long-term survivors (Polinsky, 1994). In addition, pain due to cancer or its treatment can undermine rehabilitative efforts and detract from quality of life. Pain and pain relief, however, are often overlooked in breast cancer survivors (Newman et al., 1996). The growing cancer survivorship movement explores the various levels of involvement that cancer patients may choose and provides resources to help individuals and their families improve their survival skills. As a result, many cancer patients are taking more active, assertive roles, demanding second opinions and treatment option information, and seeking

OCR for page 230
partnerships with their physicians in making decisions and managing their overall health care programs (Leigh, 1994, 1996). Quality of Life As a research topic, quality of life has evolved over 40 years from early narrative and cross-sectional studies to simple quantitative measures of various parameters, and later by longitudinal studies of greater complexity, to inclusion in randomized clinical trials. Quality of life has become a standard means of assessing clinical outcomes and in clinical trials is an accepted endpoint measurement that is considered alongside patient survival and side effects or complications (Morton, 1995). Measurement of health-related quality of life among cancer survivors is important, but comparison of quality-of-life measurement instruments is needed to clarify which questionnaires are preferable for particular populations or situations (Ferrell et al., 1995; Osoba et al., 1995). In general, however, studies indicate that although cancer survivors experience long-term changes in their overall quality of life after the completion of treatment, many positive benefits that help to balance the worst outcomes may also be gained (Dow et al., 1996). Cancer affects not only the patient but the entire family unit. Yet, very little research on the impact of cancer and cancer therapy on the family members of patients has been performed (Rivera, 1997). Professionally led support groups are increasing in number, and participation in such groups seems to enhance the quality and possibly even quantity of the patient's survival. However, there has been little research on what type of group may be appropriate for which patients and when in the course of their care that it might be appropriate (Krupnick et al., 1993). Psychosocial and spiritual factors influence a broad spectrum of medical and surgical disorders, yet the results of studies described in the research literature are inconsistent and the studies themselves are beset with major methodologic problems (Creagan, 1997). One study has shown that for some survivors, the cancer experience elicits a search for meaning, which is significantly associated with self-blame, although well-being scores were not significantly related to this search for meaning (Dirksen, 1995). Other researchers have found that long-term survivors of breast cancer are challenged to redirect their energy from issues of cancer treatment and early side effects toward quality-of-life issues related to long-term survivorship, such as menopause, infertility, fear of recurrence, family distress, and uncertainty (Ferrell and Dow, 1996; Ferrule et al., 1997). These can be categorized into four domains, each with particular areas of concern. In the domain of physical well-being, the areas of worst outcome were in menstrual changes and fertility, fatigue, and pain. In the domain of psychological

OCR for page 230
well-being, predominant needs were in the areas of fear of the spread of cancer, distress from surgery, fear of recurrence, fear of second cancer, impact on self-concept, and fear of future tests. Concerns regarding social well-being are largely related to disruption in the area of family distress, and feelings of uncertainty touch the domain of spiritual well-being. The researchers conclude that there is a need for further research, assessment, and intervention across each of the quality-of-life domains (Ferrule et al., 1996). Similar issues are raised for long-term gynecologic cancer survivors. There is little information in the literature, however, regarding the clinical issues faced by gynecologic cancer patients who have been free of disease for a period of months to years, especially younger patients (Auchincloss, 1995). Key variables influencing a patient's response to a cancer diagnosis include cultural views of illness, understanding of the role of medicine, theological and spiritual worldviews, and the sense of identity as expressed in religious ritual practice. Attention to the ethnic and cultural characteristics of the patient with cancer has been shown to enhance the quality of professional intervention (Mark and Roberts, 1994). Although conventional treatments for cancer have been proven to lower mortality rates significantly, patients continue to look for and use alternative therapies. There is little in the literature describing the actual frequency of use of such therapies, nor are there published data regarding the actual popularity of such therapies. One study reanalyzed data for 2,970 patients from the Cancer Survivorship Questionnaire of the 1992 National Health Interview Survey and found that use of additional therapies such as self-healing and psychosocial techniques increased by 63.9 percent after 1987 (Abu-Realh et al., 1996). Clinical Practice Guidelines Clinical practice guidelines are usually considered from the perspectives of physicians and other health care providers regarding the management of specific cancers. Ethical questions surrounding their use need to be resolved, however, especially regarding what constitutes quality cancer care and who will define it. The National Coalition of Cancer Survivorship (NCCS) has identified three elements essential to quality cancer care: (1) access to services, (2) appropriate, timely referrals, and (3) access to clinical trials. NCCS makes the case that (1) a goal of practice guidelines should be to help empower patients by educating them about what questions to ask as informed health care consumers, (2) well-researched quantitative and qualitative data on the patient's experience should be used to inform the guideline development process, and (3) guideline developers need to

OCR for page 230
keep in mind that the focus of clinical guidelines is not the disease itself but, rather, the patient with that disease (Stovall, 1996). Clinical practice guidelines are presented in terms of treatment; however, cancer survivorship is a process rather than a stage or time point. It involves a continuum of events from the time of diagnosis to a time long after treatment has been completed. Although there is little consensus about what underlying processes explain different levels of long-term functioning, health care practitioners can foster consumer empowerment and should incorporate advocacy training into care plans (Clark and Stovall, 1996). Cancer survivors themselves can serve as models to promote cancer prevention and screening. In one example, cancer survivors participated as models in a cancer survivors' fashion show. They tended to report that the experience was very positive for themselves and for their families and friends in attendance, although it was not demonstrated that the participants were effective lay advocates for cancer prevention and screening (Kottke et al., 1996). NIH and NCI Programs and Research Outcomes Relevant to Cancer Survivorship In preparing this report, the committee reviewed documents provided by NIH, primarily from the National Cancer Institute (NCI). Documentation from NCI indicates a number of activities related to survivorship, including efforts targeted to ethnic minority and medically underserved populations. It is not clear, however, how proportionate the samples are in terms of subgroups, and it is not clear how the research attempts to address issues that may be peculiar to the targeted groups. It is also not clear how NIH specifically addresses or prioritizes the issues raised by the research literature. In response to a request from the committee, the following program information related to cancer survivorship was provided by NCI: A description of the Office of Cancer Survivorship (OCS), which was established in August 1996. The document indicates that 126 grants deal with special and medically underserved populations and that 80 percent of these are investigator-initiated grants (R01 grants). No data on the actual breakdown of the minority and medically underserved populations targeted in funded grants are available, however. For instance, virtually all breast cancer research targets women. However, it is not clear to what degree such research targets ethnic minority and medically underserved women. A description of NCI activities with advocacy and voluntary organizations.

OCR for page 230
A current program announcement entitled Cancer Survivorship Studies in Established Epidemiologic Cohorts (National Cancer Institute, 1998j). Agenda for a conference entitled Research Issues in Cancer Survivorship, sponsored by the Division of Cancer Control and Population Sciences of OCS and held on March 9 and 10, 1998. Background information from the NCI home page on the World Wide Web, ''Creating the Director's Consumer Liaison Group" (DCLG) (National Cancer Institute, 1998f), established in 1997. It is not clear from the information provided how DCLG addresses the needs of ethnic minority and medically underserved groups. A list of more than 850 scientific journal publications resulting from awards or programs of NIH relative to cancer among ethnic minority and medically underserved populations since 1985. NCI Office of Cancer Survivorship OCS was established in 1996 to serve as a focal point for research and program activities related to the issues faced by cancer survivors. The objectives of OCS were established through a series of workshops and include the following: to develop an agenda for the continuous acquisition of knowledge concerning the problems facing cancer survivors, including the medical, psychological, and economic late effects of treatment; to support studies that aim to increase the length of survival for cancer patients, including those that involve prevention of subsequent disease and disability; to enable the dissemination of information to professionals who provide treatment concerning the problems and needs of cancer survivors; to assist in providing information to the public regarding the issues of concern to survivors; and to improve the quality of survival of all individuals diagnosed with cancer. Shortly after the office was established, OCS hosted four workshops to assess the state of research information on cancer survivorship and articulate areas of needed emphasis. Conferees at the first such meeting concluded that the levels of research support then available were inadequate to address the range of survivorship-related research needs in areas such as quality of life, physiological outcomes, second malignancies, reproduction and sexuality, and the economic impact of cancer survival.

OCR for page 230
These priority areas of emphasis have evolved to shape OCS's current research activities, which include research on the following: physiological late effects in cancer survivors 5 or more years after receiving a diagnosis of cancer, including cardiac, renal, and cognitive complications; development of long-term follow-up studies of survivors, in concert with cooperative groups, cancer centers, and the Surveillance, Epidemiology, and End Results program registries; factors that predispose cancer survivors to the development of second malignancies; reproduction and fertility problems following treatment; economic issues and questions concerning ongoing medical care; and quality-of-life issues, especially among medically underserved populations and long-term survivors. To assess the state of research in these areas and to make recommendations for future work, OCS sponsored a national scientific meeting on March 9 and 10, 1998. More than 100 investigators and consumers were invited to the conference. An analysis of research findings from abstracts of 64 speaker presentations and poster sessions indicates that only 5 presentations addressed research issues specific to ethnic minority women or offered inter-ethnic group analyses. None of the abstracts was found to address issues specific to medically underserved populations. In response to a request from the study committee for information regarding cancer survivorship research among ethnic minority and medically underserved populations, OCS staff wrote, "NCI's portfolio is currently looking at issues relevant to all cancer survivors regardless of race. The include quality of life, cancer pain management, the management of side effects due to treatment, rehabilitation, psychological and problem solving, and training for coping with cancer" (National Cancer Institute, Office of Cancer Survivorship, 1998, p. 1). As noted above, OCS also provided the study committee with a list of 126 current NIH-supported research grants that address survivorship issues among special and medically underserved populations. Only 11 of these research grant titles specifically include terms such as "rural," "black," "Hispanic," "multiethnic," ''American Indian," "minority," or "Spanish translation." These research projects appear to be directed toward issues such as cancer pain management, adapting quality-of-life measures for special populations, promotion of self-help, genetic testing and counseling, clinical trials participation, nurse interventions, and coping with cancer risk.

OCR for page 230
Director's Consumer Liaison Group As noted in Chapter 4, NCI recently established DCLG for the purpose of establishing a formal mechanism to receive input from cancer survivors and consumer advocates on the NCI cancer research agenda. DCLG advises the NCI Advisory Committee to the Director and provides input in the planning of programs and the establishment of future research directions, in addition to providing NCI with advice and feedback from the consumer community on a broad range of issues. As such, DCLG is expected to participate in providing input to the NCI research priority-setting process, helping to shape the research agenda regarding cancer survivorship, and helping the Institute better inform and receive information from the cancer survivor community. DCLG therefore serves as a conduit between the advocacy and scientific communities. Also as noted in Chapter 4, the DCLG Planning Group consciously considered ethnic and multicultural diversity among the criteria for the selection of DCLG members (in addition to representation by individuals with cancer at a broad mix of different sites, etc.). NCI appears to have succeeded in this effort, because one-third of the members of the group are ethnic minorities. In its November 6, 1997, press release, NCI notes: The majority of the newly appointed DCLG members are cancer survivors, but family members of cancer patients and health professionals involved in cancer advocacy are represented. The cancer experience of the group includes prostate, breast, kidney, ovarian, cervical, lung, bladder, and brain cancer, Hodgkin's disease, leukemia, sarcoma, and myeloma. The group includes Asian American, Native American, Hispanic, African American, and non-Hispanic white persons, the young and the old, men and women, and people from all geographic areas of the country, both rural and urban (National Cancer Institute, 1997c). Although at least one of the DCLG members appears to be from a non-urban community (Missoula, Montana), it is unclear whether other rural or medically underserved populations are represented. Nonetheless, DCLG's composition suggests that the panel may prove to be an effective mechanism for highlighting the research and program needs of ethnic minority and medically underserved cancer survivors. Furthermore, as noted in Chapter 4, the conscious attention to diversity and the inclusion of ethnic minority and medically underserved individuals on the panel serves as an excellent model for addressing the compositions of other scientific and review panels at NIH.

OCR for page 230
Dissemination of Information to Cancer Survivors As noted in Chapter 3, NCI has established a number of offices, programs, and mechanisms for outreach to cancer survivors and consumers, including several programs and services tailored to the needs of ethnic minority and medically underserved communities. These will not be described in detail here (see Chapter 3 for a full description of these programs). NCI's Cancer Information Service (CIS), however, deserves greater attention, given its prominence as a primary source of information for many cancer survivors. CIS is a successful avenue for cancer information dissemination. According to NCI, the service received 500,000 calls in 1996. In one survey, in which 80 percent of the respondents were patients, users tended to be generally very satisfied with communication from their treating physicians, had strong information needs, and preferred to participate in their treatment plans (Manfredi et al., 1993). However, no data on the ethnic minority status of the users were provided. CIS provided information on calls to its toll-free telephone service. These data are summarized in Tables 5-1 and 5-2 in Chapter 5. It should be noted that the committee did not formally analyze these data statistically (i.e., it did not compare the observed patterns of calls with the expected frequencies on the basis of an analysis of cancer incidence among the U.S. population). However, Table 5-1 indicates that approximately 15 percent of calls to the CIS telephone service were from ethnic minorities. Because ethnic minorities make up about 28 percent of the U.S. population, however, it appears that ethnic minorities are proportionately less likely to use CIS services than whites. Given the disproportionate incidence of cancer among some ethnic minority populations, one would hope for appropriately increased numbers of calls from affected groups. Published Research Related to Survivorship NIH provided a list of more than 850 scientific journal publications related to cancer among minority and medically underserved populations that have resulted from awards or programs of NIH since 1985. The committee analyzed only the titles of the articles listed to determine the distribution of publications across ratial and ethnic groups and the number of publications related to cancer survivorship. It should be noted that the categorizations may underestimate references to ethnic minority and medically underserved populations in the articles listed. The committee examined whether the indicated specific terms in the following categories actually appeared in the title:

OCR for page 230
Multicultural: "race," "racial," "ethnic," "cultural,'' "multicultural." Not Multicultural: no reference to any such terms at all or clearly indicating only a sample of white, Caucasian, or Anglo individuals. African American: "African American," "black." Hispanic: "Hispanic," "Latin/Latino/Latina," "Mexican," "Mexican American," or "Puerto Rican." Asian/Pacific: "Asian Islander," "Oriental," "Chinese," "Japanese," "Vietnamese," "Hawaiian." American Indian/Alaska Native: "Native American," "American Indian," "Alaska Native," "tribal." Related to dissemination: "screening," "education," "guidelines," "media," "disseminate/diffuse." An article was listed in more than one column in Table 6-1 if its title included more than one appropriate term, for example, "Hispanic" and "American Indian." As indicated in Table 6-1, starting in 1995, there were large increases in both the number of publications and the number of titles with some relation to dissemination compared with the numbers in previous years. The reasons for these increases are not clear, but several possibilities are apparent: since the mid-1980s NCI has funded an increasing number of research projects related to ethnic minority and medically underserved populations, resulting in an increase in the number of related publications; researchers may have published at a greater frequency multiple articles that were based on the same numbers of projects performed in previous years; and community and political activism may have increased the pressure for both. Other, less obvious reasons may also be worth investigating. Needs of Ethnic Minority and Medically Underserved Cancer Survivors As noted in Chapter 4, the committee sought to better understand the needs of ethnic minority and medically underserved cancer survivors and the perceptions of NIH programs and research activities among individuals in these communities by holding a public meeting at which testimony was received from representatives of several community-based cancer prevention and health promotion organizations. These individuals are identified and their comments are summarized in Chapter 4. However, some of the testimony presented at that meeting relates directly to the experience of cancer survivors (two of the panelists were breast cancer survivors, and another experienced the loss of a close family member due to cancer). These comments, along with the panelists' recommendations, are summarized below.

OCR for page 230
TABLE 6-1 Articles from NIH-Sponsored Programs Relative to Cancer Among Minority and Medically Underserved Populations by Key Terms in Title   No. of Articles Key Term in Title Year Total Not Multicultural Multicultural 1997 110 50 28 1996 129 42 20 1995 119 55 13 1994 83 22 12 1993 62 27 27 1992 66 40 10 1991 63 33 2 1990 50 29 3 1989 38 15 5 1988 32 24 2 1987 33 16 2 1986 39 19 3 1985 64 31 8 Total 888 403 135   SOURCE: National Cancer Institute. 1. Dissemination of cancer information to ethnic minority and medically underserved groups requires more than a simple translation of materials. Venus Gines and Lucy Young noted that when they were first diagnosed with breast cancer, they had a difficult time finding information in their native languages (Spanish and Chinese, respectively) that addressed concerns particular to their cultural groups. Gines noted that what she did find was merely translated from English. Such translations, she noted, often fail to address specific concerns that may be more common among some ethnic groups (such as the fatalism regarding a cancer diagnosis that exists among some Hispanic populations) or that fail to take into account cultural differences in the ways in which information is best communicated. In response, Gines, in collaboration with the American Cancer Society, developed Mi Nueva Esperanza (My New Hope) to provide information regarding breast cancer among Hispanic women. The booklet is written in clear, simple Spanish but also uses pictures to convey information. 2. Cancer education materials must be made available in languages other than English and Spanish.

OCR for page 230
African American Hispanic Asian/Pacific Native American/ Alaska Native Related to Survivorship 22 7 10 5 9 25 9 11 16 15 17 20 10 4 5 17 9 6 6 4 31 24 12 10 8 22 3 7 2 1 3 5 11 1 2 6 4 6   2 5 3 6 5 1 1 2 3     4 3 3 2 1 3 6 7 2   3 6 14 4   159 101 106 57 48 On the basis of information provided to the study committee, it appears that most non-English-language NCI publications for cancer survivors are in Spanish. The committee found few examples of materials printed in other languages that are increasingly spoken in multiethnic America, such as Asian and Southeast Asian languages. This observation was supported by Lucy Young, who expressed frustration at the lack of Chinese-language cancer education materials. Her organization (the Chinese American Cancer Society) has had to import Chinese-language cancer education materials or provide resources for the translation of information generated in English. 3. Members of ethnic minority and medically underserved communities, especially cancer survivors, can serve as a valuable resource in reaching other members of their communities. Barbara Clinton noted that research on the efficacy of lay community health workers is lacking. These individuals, she stated, often have experience in dealing with cultural aspects of the disease (e.g., fear of public acknowledgment of a cancer diagnosis), but they can also help patients deal with the maze of treatment options, providers, and other medical

OCR for page 230
choices. Cancer survivors from ethnic minority and medically underserved communities may be especially helpful at destigmatizing the disease, providing social support, and "normalizing" psychological reactions following diagnosis. The following recommendations were summarized in Chapter 4 but are relevant for the consideration of survivorship needs and are therefore restated here: 4. Greater sensitivity to culturally appropriate outreach efforts is needed. All of the panelists noted that problems of stigmatization, fatalism, isolation and lack of social supports following a diagnosis of cancer, and mistrust of the medical and scientific establishment, although present in the majority population, may be especially prevalent and problematic among ethnic minority and medically underserved communities. These issues affect almost all aspects of cancer treatment and control among these populations, including cancer screening behavior, decisions to seek treatment, compliance with medical regimens, and so forth. More research is needed to understand the nature of these social and belief systems and to develop appropriate interventions. For example, as noted earlier in this report, community-based health centers may serve an invaluable function in reducing isolation and increasing social support among ethnic minorities diagnosed with cancer; the role of such centers as vehicles for increasing social support (and other behavioral interventions) should be studied. An adequate understanding of these issues will also help to shape efforts at outreach to minority and underserved communities. 5. NCI should develop a strategic plan to address the survivorship needs of ethnic minority communities. This recommendation cuts across all of the recommendations put forth by the panel. As Young noted, such a strategic plan would begin with an assessment of the needs of specific ethnic and cultural groups and would be followed by a proposal to better tailor research efforts and to serve members of affected communities and their health care providers. Working closely with grassroots organizations, according to Young, is a key component of such an effort. Recommendations Cancer survivors are, in the committee's view, perhaps the most underused resource in the War on Cancer. This is especially true among ethnic minority and medically underserved populations, who face numerous cultural, socioeconomic, and in some cases, institutionalized racial

OCR for page 230
barriers to cancer prevention and treatment services (i.e., poor or less adequate medical treatment and services are provided to minorities than to whites [Sullivan, 1991]). As noted by the panel of representatives of community group and cancer survivorship organizations that appeared before the committee, ethnic minority cancer survivors are often painfully aware of the lack of services and information that might assist neighbors, friends, and relatives with either avoiding or coping with a cancer diagnosis. Perhaps more importantly, however, they possess critical expertise in how to reach members of their communities with cancer education information. This expertise should be tapped to the fullest extent possible. To its credit, NCI has established an impressive infrastructure of programs and resources to assist cancer survivors. The OCS, as noted above, has convened a conference to delineate research issues related to cancer survivorship and to coordinate NCI's survivorship-related activities. The newly established DCLG advises the NCI director on a number of consumer-related issues that affect NCI's survivorship research portfolio. In addition, NCI's Office of Cancer Information, Communication, and Cancer Education has performed a number of outreach efforts tailored to specific communities. Greater attention must be paid, however, to the unique needs of ethnic minority and medically underserved communities. As highlighted by the panel of representatives of community group and cancer survivorship organizations that appeared before the committee, NCI's outreach efforts must address problems such as fatalism regarding a cancer diagnosis in some ethnic minority communities; isolation and lack of social supports, especially among individuals who are diagnosed with cancer and who live in rural or other medically underserved communities; mistrust of medical research by many ethnic minorities who retain memories of abusive and unethical research; a lack of visibility among NCI-sponsored researchers in ethnic minority and medically underserved communities; financial and time constraints and a lack of reinforcement for researchers who seek to work in and with underserved communities; a perception that community-based organizations are discouraged from applying for research funding from NCI; and many other issues. The overall recommendation of the committee is that NCI and NIH should develop a strategic plan and timetable to address proactively and systematically the cancer survivorship issues raised in this report. The strategic plan should provide a "gold standard" against which to benchmark knowledge, attitudes, and behaviors across various target populations of health care consumers and providers. Recommendation 6-1: NCI should establish a strategic plan to address the cancer survivorship needs of ethnic minority and medically underserved groups, including coordination of an overall research

OCR for page 230
agenda on survivorship and a more structured framework for monitoring knowledge, attitudes, and behavior regarding cancer survivorship. As part of the strategic planning process, NCI and NIH should: Establish a research agenda to elucidate the issues related to cancer survivorship. This research agenda should at least aim to distinguish between and clarify the relationship between physical therapeutics and quality-of-life issues and the degree to which those issues may be generic for all cancer patients or may vary according to factors unique to ethnic minority and medically underserved populations. Develop a plan to improve the development and dissemination of cancer information to ethnic minority and medically underserved groups. Such a plan should increase the participation of cancer survivors from ethnic minority and medically underserved groups in outreach efforts. In addition, NCI should improve its efforts at the development of printed information about cancer by expanding the number of materials translated into languages other than Spanish (e.g., Asian and Southeast Asian languages) and ensuring that straight translation is not performed without attending to the possible loss of information and the cultural appropriateness of the translation. Establish baseline data regarding cancer survivorship research as it targets and affects ethnic minority and medically underserved populations. As noted in previous chapters, this will require a consistent definition of "medically underserved" groups and active efforts to collect data on these populations. Establish a more structured framework for the dissemination of cancer survivorship research findings, targeting health care consumers, survivors, and the significant others of survivors in minority and medically underserved communities as well as the health care providers who serve them. Establish a more structured framework for monitoring the knowledge, attitudes, and behaviors regarding cancer survivorship among health care consumers, survivors, and the significant others of survivors in ethnic minority and medically underserved communities, as well as the health care providers who serve them. As noted above and in Chapter 5, some of this can be accomplished through the cancer supplement of the National Health Interview Survey, which asks individuals who have been diagnosed with cancer questions regarding the use of psychosocial support systems (e.g., "After your cancer was diagnosed, did you receive any counseling or join any support groups to help you cope?") and sources of information to learn more about the disease (e.g., "Did a doctor, nurse, or social worker

OCR for page 230
give you written information about your cancer or its treatment?"). Ethnic group differences in response to these and other questions may be useful in obtaining an understanding of the unique needs of ethnic minority and medically underserved communities and tailoring survivorship-related research and programs.